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Friday, October 7, 2011

This photo was taken a few days ago before our hospital stay. The night before this picture was taken I cried to Daniel saying that I didn't understand how I could miss her so much even when I'm holding her. It's incredibly hard to explain but I just feel this urgency with Mabel and my love for her. I miss her deeply even though I have my hands and eyes on her at all times. It's such a desperate feeling. I constantly pray that it's rooted in love and not in fear but I can't be certain either way...

I realized today that I'm becoming 'that mom.' The blog mom who not only talks about their child's medical life but also blogs about it, cries about it, photographs it and lives it constantly. It's a constant in our life and I wish this voice inside of my head would shut up for just 5 minutes. But it doesn't. It's all consuming all of the time.

This is our current cocktail. 2 seizure meds, a GI med to help with her severe constipation, an antibiotic to treat the fever of unknown origin and any possible infection that didn't show up on the labs and her speciality formula that not even the hospitals keep in stock.

Speaking of her formula: It's $154.99 for a case of 25 small boxes of pure medical food. Let me just say that for those of you who talk about WIC or other state programs as if they are actually a 'crutch' for people who don't want to help themselves by working...

You're wrong.

These programs are amazing. Without their help we would not be in a position to help Mabel or get the right kind of nutrition. Daniel has a great paying job and he works hard. But even for families that aren't so blessed--I believe they are still deserving of these great services if it is a benefit to their child.

This formula is actually a hypoallergenic/gluten and casein free formula that is used to feed children over a year of age with severe issues of the GI tract. In Mabel's case, she has a hard time with milk and soy based products. This is a corn based formula. It provides almost 100% of all of her nutritional needs. When she has her g-tube placed in just a few short weeks, this will also be what we use to feed her. She takes it from a bottle but it can be drank straight out of the box for older children! It's extremely rare and extremely expensive.

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I am feeling much better today, although very tired. Exhausted is a better term, I suppose. Mabel was up most of the night screaming. We believe she is also cutting her back 4 molar teeth. It's a nightmare. And what I mean by nightmare is this:

With a teething fever and pain, Mabel's seizures increase. With increased seizures comes increased irritability. Constant crying usually results in vomiting which means that we no longer have tylenol or seizure meds in her system.

It's a constant catch 22. Always.

But today I called and asked the Dr. for suppository Tylenol and he agreed. So at least she'll get some relief that way this weekend. I'm hoping we start to rest and things get better quickly.

Mabel's g-tube surgery will still be this month. We are hopeful that this goes well and we feel great peace about our choice and our Dr's.

Thank you all for your support the last few days. I am incredibly blessed!!!